Archive for the ‘General’ category

The theme for RESOLVE: the national infertility association ‘s @resolveorg National Infertility Awareness Week #NIAW is “Resolve to Know More”. Looking back over seven years of trying to conceive, which to be completely honest, only ended recently as I entered, failed to notice, and finished, early (although not clinically premature) menopause all in one fell swoop this winter, there are many things that I wished I had known at the beginning of this journey. Some of these lessons I learned in books (I read shelves-worths), some in magazines (piles), some from my acupuncturist, some from other women and men (friends, strangers, and strangers who became friends) going through or having gone through the infertility experience, certainly some from my doctors, particularly the second reproductive endocrinologist we worked with, and even, bittersweetly, from clients in my consulting practice. [Disclosure: I am currently consulting for a nutritional supplements company called Theralogix @Theralogix that I sooo wish I had heard of when it might have changed the course of my journey.]

So in honor of National Infertility Awareness Week #NIAW, here are seven things (one for each day of the week) that I hope you RESOLVE to Know More about:

1. The key connection between age and egg quality

I had heard that pregnancy was harder after age 35, but somehow had thought that because I looked young (I still don’t have a grey hair) that my eggs must look and act just as young. Apparently not so. As women approach 40 our chances of becoming pregnant each month decline to only about 10%. http://www.reproductivefacts.org/ I feel that they should pass out brochures for egg freezing at college graduation, but that may just be me.

2. When to start working with a fertility specialist

Given my complicated medical history, my age, and my husband’s age, we should have run directly to a reproductive endocrinologist straight from the altar. Official recommendations are for those over 35 to seek input from a specialist after six months of trying (twelve months for those under 35). My regular ob/gyn is great for well-woman care and many other concerns, but did not suggest that I seek a specialist until I pressed, and we wasted time in hormonal testing at random times of the month and other literally “unproductive” activities that I can never get back. When we did see a fertility specialist, he leapfrogged us over several of the usual first steps like Clomid or IUI and we went straight to IVF, the most intensive and expensive, but by that point, medically indicated procedure.

3. The connection between egg quality and nutrition.

Over the course of my time in the “land of IF” I went gluten-free for several months, upped my fruits and veggies significantly and basically followed most diet recommendations found in fertility books at one point or another with no real plan or path, and no sense of what nutritional plan was truly suited to my personal situation and needs. I also tried Chinese herbs and several versions of nutritional supplements recommended in books and blogs, but had no basis upon which to choose them. I didn’t know about NSF certification or where to go to find supplements with evidence of effectiveness and sources where the purity and integrity of the product was assured. I didn’t know that particular substances like CoQ10 and DHEA in the right formulations can truly help the right patients.

4. The importance and prevalence of male factor

Now my DH (dear husband in fertility speak) has 3 kids and 2 grandkids, so it was not likely that he had issues, although the years may have taken a toll on motility, quantity, and oxidative stress may have caused DNA fragmentation, factors older fathers must consider. For 30% of couples, a challenge from the male partner was a factor in infertility. It also just made me feel better with all that I was enduring, to focus for a moment on his eating, vitamins, and health behaviors.

5. The Importance of Vitamin D for enhancing the interplay between egg quality and uterine receptivity.

It may all start with the egg, as the excellent new book by Rebecca Fett, a fertility patient and molecular biologist, details, , but the journey to a healthy pregnancy is multi-factorial — a miracle — when you think of the nutritional, hormonal, immunological, and physical variables involved.

6. The importance of patience in the fertility journey

At one visit to the fertility specialist I saw a woman laying down on the floor, curled up in a ball. Everyone else was walking around as if she were invisible. I guess it was hard to know just what the right response was. I decided to lay down on the floor next to her. At the beginning I thought that infertility would be like other medical problems I had had. I would bring them to the right doctor, they would give medicine and/or a procedure and I would be fixed and move on. I have never been tested more as a woman, as a human being, as a person of faith. One of my best resources was the nurturing and normalizing of the experience with other patients in a mind-body support group offered by my acupuncturist.

7. What you value most in building a family.

Today there are a variety of options for building a family from donor eggs to surrogates to adoption. There is no one right answer. Don’t let anyone tell you there is. Listen to your heart, listen to your spirit. I truly wanted my own child – part me, part my husband – and my husband agreed. When that became no longer an option, my journey ended. I feel a sense of peace with how much I did, how far I went, what I did and didn’t try based on what I knew at the time and the resources – financial, physical, and emotional – I had. My journey as best stepmom (and grandmom), aunt, godmother, mentor, and puppy-mommy ever is just beginning. Be warned, if your child comes anywhere near me I will ply them with toys, treats, jokes, stories, and overwhelming love and fun until they would much rather be with me than go home with boring old you.

Here’s hoping that you end National Infertility Awareness Week not only knowing more, but feeling wiser, empowered, and supported.

Like many patients and patient families who have lived with a serious or chronic condition for a period of time and have arrived on the other side of the shock of diagnosis, the confusion of new terminology, and the arduousness of treatment I came to the point in my journey when the decision presented itself – try to go back to living the life before or reorient my life to figure out how to help other patients. Neither decision is wrong, in fact, I have tried living a life where there was no reference to my medical conditions, but that just never seemed the right choice for me, for my purpose and place on this planet.

For almost two decades now I’ve worked in healthcare, primarily working for, with, or advising others how to work for or with patient advocacy organizations. This year I am embarking on something new, and I’d love for you to go with me. I am launching a new nonprofit, building it from the ground up. Over the course of this year I will write about my process for creating a patient advocacy organization, the sources I use, the best practices I leverage, and the lessons I learn from my inevitable mistakes.

And I’d love to hear your thoughts from your own experience, in fact I make an urgent plea for them!

Lesson 1: Am I filling a need? Am I the best person/organization to fill it?

I’m not the first patient to think, “I’ll start a foundation!” However, we all know what road is paved with good intentions. There are thousands of health-related 501(c) 3 organizations, most quite small. Some do amazing work. Some though, if we were to be honest, do not accomplish much and create confusion in the disease landscape, and steer resources from other organizations which are or could actually make a real impact. So my first step in creating a new patient advocacy organization was to try to have people talk me out of creating it. I asked as many different types of stakeholders in the relevant disease state – other patients, clinicians, researchers, companies, and people who knew nothing about the disease – the same questions:

What is most needed in this space?

Is another organization planning or equipped to meet this need?

In my case (and yes in future posts, I will tell you what disease), I was told repeatedly (and in some case emphatically) that there were no organizations that were poised to meet several crucial and clear needs to advance the field and improve the lives of patients and there were specific ways that my background, experience, connections and expertise matched those needs. My choice is not an indictment of other organizations. It makes a lot of sense to focus on developing a particular expertise so that one organization may end up being the go-to for support, another for research funding, and another for advocacy. Where problems arise is where there is mission or operational overlap and an organization is not providing a unique value to the community. If the answer had been otherwise I would have joined one of the organizations.

Too few patients/patient families go through this step, or are willing to put ego aside if they do, resulting in unnecessary fragmentation of the advocacy landscape. In fairness, some patients/patient families are also rightly turned off by the bureaucracy or staff capture of some of the larger organizations and want to make sure that their efforts and dollars are used in a highly specific way or more directly on patients.

Question 1: Why did you start your organization? What specific need were you trying to meet?

I cannot believe that it has been months since I posted. It has been a whirlwind since July 30th when I started as President & CEO of the American Liver Foundation. I have traveled almost 15,000 miles learning and listening to staff and volunteers in our 16 chapters around the country so that I can do the best job possible on behalf of the 30 million people in the U.S. ( like me) affected by liver disease. During one of those trips I also had the privilege of doing an Ignite presentation at the Stanford Medicine X Conference as an e-patient scholar. Thank you, Stanford Medicine X planners, for inviting and integrating 35 e-patients rather than the customary 1 or 2 at most meetings.

Top of mind for me was and is, what does a Next-Generation Non-Profit look like? How do you create one? How do you transform a last-generation traditional non-profit into one? Thank you to Sarah Krug, Executive Director of Cancer 101 and President of the Society for Participatory Medicine for sparking many of these discussions.

10, 792 = Days since my initial diagnosis with ulcerative colitis. 10, 792 days ago I became a patient.

18 = years since my liver transplant. I consider myself blessed to receive this gift of life.

16,036 = number of people on the waiting list for liver transplants. Only about 6,000 people receive transplants each year.

100 = types of liver disease. Babies are born with genetic/metabolic disorders, teenagers can develop autoimmune conditions, the CDC recommends every Baby Boomer be tested for Hepatitis C

25,000,000 = people living with at least one chronic condition. This is not a liver-specific quandry.

11, 473 = Twitter followers of @epatientDave ( on that date) — one measure of online patient advocacy. Note the large gap between the number of patients and the number of epatients. I see opportunity there.

42 = Patient advocacy groups that meet the standards of the National Health Council, the umbrella group for traditional nonprofit organizations from the American Heart Association and the American Cancer Society, and a leader in policy around chronic disease and medical research

5 = minutes, less now, to make the argument that uniting the energy of epatients with the structure and reach of the traditional patient advocacy organization we can do a better job of creating patient-defined and patient-driven change in healthcare

36= The American Liver Foundation, my organization, is 36 years old. The oldest and largest patient advocacy organization in the liver space.

1 = I am the first patient to be CEO of the Foundation and one of the only patients to lead a major patient advocacy organization (Take a moment. Think about it.)

2= questions comprise the new strategic filter for everything we do as the Foundation — (1) does it solve a problem for a patient or a patient family? (2) are we solving the problem in the most innovative and effective way possible?

20 = number of Board members I needed to convince that these were the right questions to be asking, the right direction to go in. And just to explode any misconceptions that next-generation non-profits is about age, or even the sole province of patients, my biggest supporter has been practicing medicine as literally as long as I have been alive. Next-generation non-profits are about impact.

8 = active partnerships between the Foundation and other associations

14 = pilots pending with academic medical institutions

3 = satellite sites for the patient-centered advocacy forum we held to get insights directly from patients to form the basis of our policy agenda

4 = government or quasi-governmental agencies ( pop quiz — name them in the comment section!) with new (past 2-3 years) patient/stakeholder engagement positions that we invited to the forum to interact with our patients

16 = chapters around the country, because at the end of the day it is about meeting individual needs, often face to face, or based on the specifics of the community

10, 792 = days from now I hope that there is no American Liver Foundation because we would have been so successful in eliminating liver disease. My vision is that next-generation nonprofits are not about their own self-perpetuation, but about meeting their mission. I hope that 10, 792 days from now no one else’s little girl becomes a patient.

Since TEDMED, which ended a little more than 3 hours ago, was a fantastic mix of the silly and the sublime, it would not be inappropriate to start with a song lyric quote from Milli Vanilli “Girl ( and Guy) you know it’s true”. TEDMED is everything you’ve heard and more. The event (conference is too limiting a term) brought a blast of California cool to the shores of the Potomac here in Washington, DC.
Presentations ranged from acrobats to violin-playing neurobiologists, from talks on cutting-edge biosensors and genetic manipulation to the common sense concept that food is medicine, but the true magic in TEDMED was the carefully “curated” group of attendee/participants. 100% of the people I met were electrically smart, engaging, generous and innovative. Although the participants (attendees is truly too passive a term) ranged from CEOs of large health systems to celebrity surfers, everyone demonstrated an attitude of genuine interest in discovering what the next person was doing or thinking.
With such a purposefully eclectic set of intellectual and emotional stimuli, I needed to stop and ask myself what I would take away and apply to my life and business. What would be the long-lasting TEDMED effect on my life and perhaps more importantly what would my TEDMED Effect be? How would I be more innovative, imaginative, and inspiring (the TEDMED principles) after having participated?
1. I will continue to persevere despite the challenges inherent with transforming something as complex as healthcare, thinking back to tennis and feminist icon, Billie Jean King’s statement that “pressure is a privilege”.
2. I will collaborate with others to brainstorm how to connect high-level advances in technology to traditionally medically underserved communities so that no one misses out on the promise and potential of health innovation. As Leslie Saxon, a cardiologist at the USC Center for Body Computing, said, “access to your health data is the new civil rights issue”.
3. I will strive to live more in harmony with myself, my microbiome, and the earth as “health is a form of non-violence against yourself” to quote Mark Hyman from the Institute for Functional Medicine. Such a transformational thought for patients like myself with autoimmune conditions.

4. I will never again underestimate the power of design to foster and energize flow, communication, and collaboration. The Social Hub as exhibit hall reimagined and brought to life was a game changer for all of us who ever dared entertain the question, ” how do you make problem-solving fun?”, or as the Surgeon General Regina Benjamin observed, thought that “healthcare can be joyful”.
Whether you attended in person, watched via the 2000 simulcast sites, or are now excited to attend next year, I’d love to know, “What is your TEDMED effect?”. Please comment below and let me know.

What did you find? Nothing. Exactly. Your heard it here first folks. A new concept for a new year.

As a long-time Star Trek Fan (Original, Next Generation, Deep Space Nine, even-numbered movies) I had believed that space was the final frontier. In patient engagement, however, I have come to believe that in fact the final frontier is research.

Although there is greater acceptance by physician, health system, and academic communities that patient engagement is desirable and likely to improve outcomes on an individual and population health basis, there still exists skepticism to the point of incredulousness that patients could, let alone, should, have a role in research other than as subjects.

Patient engagement for a large segment of the healthcare system equates to compliance, or if they are being politically correct, adherence. Engagement, to them, means participation to the degree that we are able to do what the doctor has told us to do correctly. However, just as children do not stop growing at that adorable toddler phase, patients are maturing as well in the types of questions we ask and the roles we would assume.

One of those roles for many patients, particularly those with chronic and/or rare diseases, is the development of research questions, queries about analysis and applicability of existing data or recommendations for studies that answer questions based on their own experiences and areas of emphasis.

There are numerous instances of patients or parents/caregivers starting foundations or companies for that matter to jumpstart the discovery and development of cures or even advocacy organizations like Faster Cures which has a robust track record of innovation and collaboration, but aside from the work of a limited number of advocacy organizations confined primarily to specific disease states, (Advocate Institute), no one teaches the average patient how research is conducted or provides an opportunity to become a researcher.

A great deal of the resistance by the research community to patient engagement in this arena is the inability of most patients to “speak the language”. Just as in Stage 1 of Meaningful Use patients were dismissed when they weren’t able to answer questions such as “Are you in favor of meta-tagging of data?”, patients without backgrounds in biostatistics, study design, and epidemiology are considered to have nothing to offer to the field.

Learning the lessons of Stage 1 Meaningful Use of Health Information Technology, which has progressed to a burgeoning consumer engagement phase and active mhealth community, I propose a two-fold solution:

(1) Patients and caregivers would be well served to gain research literacy – an understanding of the mathematical and scientific terminology and tools fostering the ability to interpret and apply medical information and the clinical study process that produces that information. (If that sounds daunting or unreasonable, figure that if nothing else, the ability to differentiate absolute from relative risk will stand you in good stead every time you read the morning paper and see a screaming headline that states drinking coffee increases your risk of death 800%)

(2) Researchers need to develop the right questions to facilitate the translation by patients of their experience into research terms and frameworks. Just as “Are you in favor of meta-tagging of data?” evolved into “What do you want an electronic medical record to do?”, the clinical research community would benefit (in better targeted studies, faster recruitment, better retention, and increased adoption of interventions) from meeting patients where they are.

PCORI is charged specifically with identifying and developing mechanisms for patient engagement in comparative effectiveness research. It is potentially transformational in defining research in a manner that is “informed by the perspectives, interests and values of patients throughout the research process, from the selection of research questions to the dissemination of research results.” It is my hope that PCORI and others begin providing patients with the training and tools to make high-quality contributions to research and motivation to physicians to set another chair at the table.

By this point in January we are all wearing our Fitbits and logging our every mouthful into Lose It!, but beyond our own quantified self, what resolutions have we made to be better e-patient advocates? I propose and have made the following 3 resolutions and ask that you join with me or share with me your own.

In 2012 I resolve to:

Courageously and persistently share my e-patient advocacy with my own care team and institution to support (i.e. insist upon) their adoption of new technology and the workflow changes necessary to partner with engaged patients. (The e-patient version of think global, act local.)

Improve my research literacy (more in next week’s post) – my facility with the terminology, methodologies, and mathematics required to converse with the scientific community and interpret medical information.

I have spent the past two rainy days with senior executives from the Adventist Healthcare System and a range of integrative medicine and community leaders as part of an effort called Next Century Health. Next Century Health is a visionary initiative of the Adventist Healthcare System, a large integrated network of hospitals, rehab facilities, home health, and other health services, to respond to the key trends and drivers transforming healthcare today in something more than a pro forma fashion. I, along with such notables as former HHS Secretary Dr. Louis Sullivan, former FDA Commissioner Dr. David Kessler, and former Senator Dr. Bill Frist, are committed members of the Next Century Health Leadership Council. Below are 5 reasons I think that Next Century Health may actually achieve its ambitious goal of advancing whole-person health and healing across the greater community.

It’s in their culture. The Adventist HealthCare System has its roots in the Battlecreek, Michigan health resort of Kellogg’s corn flakes fame. It flourished with a focus on connected mind, body, and spirit for healing purposes. Discussions of whole-person health and well-being are authentically part of their DNA as an organization.

They have a track record. The five-year and counting Center for Health Disparities established by Adventist is a create model of addressing tough issues, working with community leaders, and keeping long-term commitments.

Vision before bricks and mortar. The system has several large-scale building projects in the works, including a massive White Oak Campus adjacent to the FDA. Integrating elements into every building and campus expansion plan that actively promote fitness, restoration, and connection from the start rather than as an afterthought greatly increases their chances of adoption and execution.

Partnership, Structure, and Sustainability. The two days of discussion included very tactical and tangible planning for the best partnerships, structures, communication loops, and policies to sustain the effort for decades. This could have been so easily just a PR opportunity, but the time commitment of the hospital and system presidents to a multi-hour roll-up-your-sleeves brainstorming and options weighing lent a great deal of credibility.

Stewardship. The second day of the Next Century Health meeting was a forum on Whole Person Health, Scientific Advancements & Ending Obesity with panelists including former AARP CEO Bill Novelli and Partnership for a Healthier America CEO Larry Soler. A robust conversation on the root causes and potential solutions (active, passive, and sanction-based) for the obesity crisis was held for several hours, but what impacted me most was the last comment of the morning, made by Dr. Alan Handysides, Director of the Department of Health Ministries, and a member of the Next Century Health Leadership Council, that core to the Adventist approach is the belief that stewardship of health has value. From roots that strong a mighty tree can grow.

Nourished by time, quiet, and a flurry of emails on the new listserv for the Society for Participatory Medicine, the December holiday break allowed me to be thoughtful about everything that transpired in 2010 and what direction I felt called to take in 2011.

The new year is a perfect fulcrum for change. Two particular changes stand out . . .

1. I realize that it is impossible and perhaps not as desirable as I had originally thought to distinguish between my DCpatient (personal) and Donna Cryer (professional) personas. Each powers the other.

2. My expectations of the healthcare system and the care I receive have been elevated. Now knowing what is possible in terms of team collaboration, information sharing, and operational efficiency I am ever more impatient for the reality of my care to rise to that ideal.

So I have great expectations in 2011 for working with all who read this to create the patient and family-centered wellness and healthcare delivery system of our imaginations.

There are countless articles and books on innovation – incremental innovation, radical innovation, disruptive innovation. However, I would argue that, with a nod to the authors of Blue Ocean Strategy, that unless innovation is value innovation, providing some deliberate and distinguished combination of factors or service to improve the experience or effectiveness for relevant stakeholders while reducing costs it is not innovation at all, but simply something new.

That said, the case for personalized medicine as a value innovation, a valuable innovation, is one I am eager to make. The most common definition of personalized medicine is genomic-based risk assessment, diagnosis, treatment. Personalized medicine broadly construed also comprises technology-supported medical practice able to aggregate data on a population level to a degree that positive or adverse outcomes can be spotted in sub-populations of patients, and patient-centered medical practice that provides care in the context of an individual’s culture, values, and health literacy levels. The uniting concept is a healthcare framework that gets the right treatment for the right patient at the right time, creating a safer, more effective, more cost-efficient healthcare system. Think of personalized medicine as producing Me drugs rather than Me-too drugs.

The value of personalized medicine is best perceived using a systems view of cost and experience across identification, diagnosis, and treatment of a disease. Imagine oncology today without personalized medicine. A woman would not know at a young age that she has a genetic predisposition to a cancer, despite no family history that would raise no red flags. She and her physician do not start an early or aggressive schedule of mammography or other screening. A lump in her early 30s is dismissed. When she does develop cancer, there is no way of determining what type of specific cancer, she is given a treatment that she does not respond to, other treatments are attempted, but ultimately she dies. The cost of her care is needlessly expensive and the clinical outcome is tragic.

The reason that that does not happen today, at least for certain cancers and other conditions is that a financial and regulatory system supported the development and access to early personalized medicine products. The greatest threat to continued value innovation in personalized medicine is lack of a coherent financial and regulatory framework that recognizes the value of the genomic-based diagnostics and therapies and reimburses appropriately.

A personal example – as a liver transplant I have blood analysis done several times a year to review my liver enzymes, levels of medication, and other markers. Recently, my physician and I have added a test called Immuknow® that provides an assessment of my immune system’s individualized response to the immunosuppressive medications prescribed. This test gave unique information that despite my dosage, my immune system was still very active putting me at possible risk for rejection of my organ. Where traditional tests would have led to reduction of my immunosuppression given my apparent stability using traditional tests, the personalized test compelled a different treatment decision. Without this test it was likely that, as in the past, I (and my insurance company) would have incurred tens of thousands of dollars for liver biopsy; greatly increased dosages and numbers of medications usually delivered by IV not orally; hospitalization; and in extreme but foreseeable possibility, rejection or retransplantation which would put the figure then in the hundreds of thousands. Avoidable for about $600.

Immuknow® is FDA-cleared to be conducted in a complex manner to produce clinically valid results, yet current CMS determinations under the constraints of the laboratory fee schedule processes of cross walks, gap fills, or code-stacking, basically attempts to match new technology to old payment systems, have resulted in a level of reimbursement that does not even cover the costs of performing the test correctly, let alone reflecting its value. The likely consequence is that hospitals will stop performing the test in an environment where they lose money each time they perform it, and patients and physicians will lose access to this test and the important clinical decision support it provides.

The Bible warns against pouring new wine into old wineskins as unworkable. Our current system for determining the reimbursement for personalized therapies is just as unsustainable.

I write this as I sit on hold for now going on 1:05:50 hours trying to schedule an MRI at Georgetown Hospital. Yes, I named names. I usually don’t. But the list of offenses against patientdom by Georgetown now runs so long my head might pop off. They clearly do not value patients time. If I did not need to be seen by an academic medical center, specifically, one with a transplant center, I would be so out of here.

There is much abuzz for the past few months on how HIT can improve hospital workflow and healthcare practitioner productivity. Never once have I heard anyone speak about trying to improve patient productivity. But I guess no one ever considered that my time and those of other patients is valuable.

Let’s consider just this one test.

1. I was mailed one slip of paper a week after I spoke with my physician– a universal test requisition form. No instructions on how to schedule, when to schedule, where to go, preparation instructions, anything.

2. I had to call my doctor’s office and request this practical information. On hold only 3 minutes that time.

3. I call to schedule an appointment. So far this is 1:14:26 and counting.

4. Assuming I get an appointment (big assumption), I know I need to allow extra time to park because the current parking is woefully inadequate.

(note as I was wrapping up I was finally connected 1:28:44 – no apology. 1st dates/times given were incorrect because of the type of test I need. Then offered 12/21 date – forget egg nog, pass the contrast. So my test ordered 10/29/10 will not be done until 1/10/11. And I have to get renal function tests beforehand – I know what they are for, but no explanation was offered)

5. There is the wait for the test, usually no relationship to actual appointment time.

6. I have never yet gotten non –ER lab or other test results back in less than 2 weeks. Often I have to be proactive about tracking them down with my doctor.

7. Then I guess we start all over again for whatever treatment is necessary.

By my calculations this will take at least 8 hours of my time not counting the meditation time it will take to recover from the frustration. A full work day’s worth of effort for just one test. Multiply this by millions of patients. Can our economy afford this?

What if:

1. My doctor’s office (at this same institution mind you) scheduled the appointment for me or could point me to online scheduling options.

2. Directions, instructions, etc were available online and downloadable.

3. Any prerequisite tests would be ordered automatically or at least an alert sent up to my doctor that she needs to write an order.

4. MRI results were available promptly and accessible through a patient portal.

5. A follow up call or visit was automatically requested/scheduled prompted by the MRI results.

If I hung up I would be labeled a non-compliant patient, not following up on my doctor’s instructions, a bad patient. What responsibility does the institution have to make healthcare work?